Vasculitis UK
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WHAT HAS BEEN YOUR EXPERIENCE WITH RITUXAMAB? HAS IT RESTORED YOU TO A SENSE OF NORMALCY WHEN ALL ELSE HAS NOT?

My question speaks for itself. But if it took you into remission, how long did it take; how many infusions were needed before you felt well? How long did your sense of well being last?

Or, on the other hand, has it not worked for you, and, if not, why do you think it was not successful.?

I am changing rheumatologists, and will see him in early June. Would like to be armed with the scoop in advance. Thanks.

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Hi. I felt better within 2-3 months of the first infusion and After the 2nd treatment 9 months later, my joint ligament and tendon problems were well under control. I also take hydroxychloroquine and methotrexate regularly and continue with rituximab every 9 months. Some people’s infusions can last up to 2 years or may need a shorter cycle up to 6 monthly. The one thing I still struggle with is fatigue. Good luck with your appointment

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Hello Pikzie, Was your 1st infusion just one infusion or was it a series? Sorry to hear that you stll struggle with fatigue. That is what plagues me the most. I can deal with and have been dealing with pain, but the fatigue is the most life imparing part of this disease.

If I go on any type of an outing, just for 2 or 3 hours, I know I'm going to be an exhausted wreck the next day, even if my husband has done the driving .

This upcoming weekend will be a real challenge because we are going on an overnight about 1 hour away to Longwood Gardens in Kennet Square, PA. It is a beautiful great set of gardens designed by Henry DuPont , the great businessman of his time. Indoor and outdoor environments. This weekend there will be a colored fountain display with fireworks in the evening, and we will stay at a nearby hotel after.

I have been there many times, and know from my healthy days, that it is a lot of walking, but I just wanted to do something special and outdoors. Luckily, there are many places to sit as you go.

On top of that, my dermatologist went to work on my right foot a week ago that had several squamous cell carcinomas mixed in with abnormal plaques (maybe vascultis related ); she numbed the foot and scraped all bad skin off, but now I don't know how I will do with a shoe.

But we can't let medical problems stop us from living.

I am happy that your musculoskeletal problems are well under control and that you have had a positive response. I know after 18 months on lower and lower doses of Prednisone and weekly Methotrexate, I am not improving at all.

I am seeing a new rheumatologist in early June, known for his compassion and not rushing patients out. He is also a solo practitioner so you know you won't be passed around to others and physician assistants. I hope he can help me, and I have no where else to go but to Rituxamab infusions and maybe tweaking of doses of others.

Thanks for your response and best wishes...for relief from fatigue.

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I had a positive p- anca and my new Dr. wants me to do retoxion again or methotrexate. I hate pills so I am going to see if my ins will pay for rexiumb again

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Hi Chritophene47- each rituximab treatment is two infusions two weeks apart. They can be repeated every 6 months although some people find they can go up to 2 years before needing further infusions. Fatigue is a real problem - as you know all too well - and whilst it’s still a bit of a problem for me, the rituximab overall has made a really positive difference to me. I’d give it a go! Good luck with the weekend trip - and your appointment in June x

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Hi Pickzie, You are right; if your overall sense of wellbeing is restored, it is much easier to handle fatigue. Everyone experiences fatigue which is fine after a good day's work or a fun day. But not good if you are fatigued when you feel as though you do nothing. If the doctor agrees, I will definitely go for it.

Thanks for your well wishes for my upcoming weekend; I hope I will manage; there are a lot places to sit. Don't remember if I mentioned, in addition to all else, I had a number of precancers and squamous cell carcinomas removed from my left foot about 9 days ago; the healing is going well and no pain there until I put a shoe on; I hope bandaids and and a slide style sneaker will work.

I am paying for a life in the sun so I cannot complain, and am thankful for those wonderful golden years, and I would probably do it again.

Glad the Rituxamab made a big difference for you.

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I actually have each of my rituximab infusions every four months and do 1000 mL. I have tried the sets of four, one per week, and have tried the set of two infusions two weeks apart, but I cannot go longer than four months without additional treatment.

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I had Rituximab for the first time last November for my GPA. Since my diagnosis in Januaury 2017, I'd had cyclophosphamide, azathioprine and mycophenolate which had not brought the disease under control for any length of time. I'm waiting to see how effective Rituximab is. According to my doctor, the GPA is "flitting" with occasional symptoms in my sinuses, joints and eyes. My energy levels are much improved. My ANCA has not dropped so they suspect I'll relapse again as soon as the Rituximab wears off. I am not back to normal as I'm dealing with the legacy of high dose prednisolone. I'm also on the Avacopan trial (alternative to prednisolone) so it's anyone's guess what's actually helping me at the moment. Good luck, give it a go if you can as the evidence is as good as it can be.

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Dear Ziggy,

If your energy levels are much improved, that's enough of a recommendation for me. What have you experienced from the legacy of high dose prednisolone?

I will need to check out Avacopan, even though it is still in study. If it is a double blind study, you don't really know whether or not you are receiving it unless you meant it is for you personally to try in lieu of prednisolone.

Continued good energy and I hope that notwithstanding your ANCA level, you will have no relapse.

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No, I don't know if I'm getting avacopan or not, and won't know till the trial ends in October. But I do know that I'm not taking prednisolone anymore: it would stopped either in December or March. Despite what everyone says about prednisolone withdrawal, I really don't know which - there's arguments both ways!

The prednisolone has given me major problems with reflux, and consequently breathing, two thoracic compression fractures, glaucoma (controlled by eye drops) and endless musculoskeletal problems. I have moderately severe osteoarthritis, so it was wonderful being on the high doses, no pain at all. But it meant I damaged tendons in my foot and all the loose bodies in my knee started moving around, causing extreme pain. But I'm alive! I'm alive! 😊

Having more energy is so brilliant. I can now spend nearly all day pottering about, with regular 20 minute breaks to see me through. This means I can sort out the laundry and the dishwasher on the same (good) day. And see a friend, maybe.

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Hi I'm sorry to hear it, I hope you are on the mend soon stay strong. I just wanted to know how many milligrams of steroids are you on and how long have you been on them for?

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I had steroid eye drops initially which started the glaucoma issue. Then i varied between 40mg and 7.5mg from February to October last year. What did a lot of damage were three methyl pred infusions (1500mg) in October: I felt absolutely brilliant but wow did I pay the price. And I was very poorly and they were like magic, felt so much better v quickly. Since then, with the drug trial, I've not known the doses, but I know I'm not on them now.

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Hi i have been on Rituximab for two years now and it took me into remission and so far all been stable.No after effects with it apart from a bit tired.

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Hi Keithtim10, Wonderful news! I will take a bit tired any day. Continued success to you...

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I did it back in 2014 have been in remission until 2017 now I have got to do that or methotrexate.

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Hi Jenwide,

A 3 year remission is a wonderful outcome even though it seems you have relapsed. Are the breathing issues and fatigue the reason you need to repeat Rituxamab or go on Methotrexate. ? Had those symptoms resolved when you were in remission? Or did you still have them when on Rituxamab?

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I still have fatigue and breathing issues

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I had four infusions in may of 2015 and by October, I was considered in remission. I had just weened off of prednisone as well so for the first time since diagnosis, I was completely drug free. Sadly I relapsed just a few weeks later and had to restart a three year treatment plan of more rituximab and a few months of prednisone. I have been doing one infusion every four months since 2016 and have been feeling okay. We once stretched the infusion five months and by that time I was very close to relapse. I find myself in a lot of joint pain the month prior to my infusion and the weeks after. I had my last infusion about a month ago, and I’ve been having lots of problems with thinking, memory, concentration, dizziness, and blurred vision, which is quite odd for MPA, so I’m hoping it’s just a side effect of rituximab. Answering your question, no, I don’t feel normal. I’m an eleventh grader in high school and have missed over half the school days, I don’t have many friends because they don’t get it or car to learn, and I’m still in pain which is a distraction from reality.

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Hi MakennaMarie,

So sorry to hear about your relapse. Being in 11th grade with such a disease must be an isolating experience especially when your peers don't understand the complexity of what you are going through. It must make you angry.

I do hope you can catch up on your school work, or repeat it when your mind is clearer and you feel better.. The one thing you have on your side that many of us don't is YOUTH AND TIME. That gives you a leg up. AND it's never too late to be in the school of life. Nowadays, there are no age or time limits on the beginnings and ends of learning. Just don't give up on learning as you go through life. As long as you can read, write and do basic math, you can teach yourself anything. I have already learned so much new stuff just on this site alone.

On this site, you have many, many virtual friends who do understand the illness and who can give you their insights and support. Starting a new treatment plan again is a bore, but it also may be the chance to start over toward a long lasting remission.

I am curious what are your interests, ambitions and dreams? I do pray all your wishes do come true. We are strong; we have to be to fight this demon disease. You are stronger and braver than you think. AND you will get through this.

You have taught me that Rituxamab is not a magic bullet, but sometimes it takes more than one shot to disable a disease.

Have you spoken with your doctor about your visual, concentration and memory problems? Try to follow up with your doctor on the chance that it is not the Rituxamab, but rather a diagnostic question. It seems to me vasculitis is always changing the rules.

Do pay attention to your vision; I recently discovered that the central vein in my left retina is occluded after I lost vision in my left eye for a few minutes ; luckily it popped back on its own. A neuro-ophthalmologist ordered doppler testing ( an ultrasound of the eyes) and sure enough ,the central and only vein in the eye is occluded. The blood from the eye must have been searching for an alternate route back to the heart and lungs while I couldn't see. Should that happen, you must go to urgency for a high dose injection of steroids to protect your vision.

I hope to speak with you again, McKenna Marie. Hugs and good vibes to you....🌠🌈🎉🍕

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